Janine

I was born on January 7, 1960 in Winchester, Hampshire in England.

Little did I know what direction my life was going to lead me in. I can’t remember much of my early years, and sometimes this disturbs me, because it is only since we came to Australia in 1968 that really clear memories remain. I do have snapshots of some memories, but not very clear ones. I don’t know if this is normal or not. Most times I try not to let this get to me, but there are times when I think if there are reasons that I don’t remember.

We migrated to Australia on the Fairstar in December 1967 arriving at the Port of Melbourne New Years Day, 1968. I can remember standing on deck when the boat docked.

I can remember as a child not being in the cool gang. I was teased most times, because I couldn’t play sport like other children could, I was slow, always came last in any physical activity. The state school that I attended did not have a drama section or music section to their curriculum so I really couldn’t hook into anything that was enjoyable or meaningful for me. Even when any drama or music was offered, again I was last of a very long list. I was a meek, shy child. I wouldn’t put myself forward and was very anxious in any new relationships. I also was a sick child. What we didn’t know at the time was that my tonsils were poisoning my blood, and we didn’t discover this until after we had migrated to Australia and my tonsils were removed when I was eight years old.

My school work was average. Mum says that until we migrated, I was top of the class, but I can’t remember any of this. I can’t remember being rewarded or receiving accolades for work well done. My math was atrocious. I hated it. I couldn’t do it at all and learning times tables was torture. I was unable to analyze books or prose in any depth past the superficial. Everything was viewed in black and white. At this stage, I didn’t have any insight to any problems that I was having, or why.

I remember being very depressed as a teenager. My parents did the best job that they knew how, but my emotional health was not ideal. I felt that I had little support and found it difficult to talk to my mum or dad in any shape or form. From hindsight, we didn’t know what was going on, or what life was going to give me later on, but it could be attributed to Fragile X. Researchers espouse that carriers are more prone to depression and anxiety, and looking back I can see that now. Had I been more informed and knowledgeable, maybe I could have sought more appropriate support through the medical profession, but we didn’t know we had Fragile X at the time. Even as an adult, I can remember an episode where the world was covered in a dark cloud. I remember standing in my lounge room and feeling dull and grey. I had no enjoyment and everything seemed an effort. Even then, I had little insight into depression and the effects that it can have on different people.

Since the kids have been born, I have had my ups and downs. This period now, is the longest time that I have been without having depression. Some dispute that the lifestyle of raising a child with a disability lends itself to increased rates of depression, but as researchers discover more, they espouse that Fragile X is the first gene that they have found that affects emotions and behaviour, so even for them it is very new. They also question about whether the length of repeat correlates with the level of difficulties that individuals have with Fragile X. Now knowing what I do now, I think there is some truth to this. I now think it is silly of me to battle on by myself when I can access appropriate professional help that aids my functioning in my life considerably.

I function quite highly as a psychiatric nurse, but there are times that I do fall into a hole. When this happens my confidence lowers, I tend to over-read everything, I become flat and have less enjoyment in my life. I see everything through the negative before using self talk to view events and conversations in a more balanced way. I have to protect myself through this, because when I disclose this, to allow extra support, it does affect relationships. It can either support me or potentially provide opportunities for my mood to dip even lower. It then becomes harder. It’s not a very nice position to feel that you are on your own and that no one else understands, because in reality that is not true. I become less interactive and less engaged in the environments around me. What I find difficult now though, it finding a professional that can take each piece of the jigsaw and address it with the depth that it deserves. At the moment, I am on a journey to find that professional.

I struggle with social anxiety and forming new relationships. It seems as though I miss the cues of initiation, so I don’t respond at all, or jump in straight away which can be off putting for people. I hate large crowds and I won’t go anywhere without an invitation or without anyone I know well. If I do go, I tend to stand in the back corner, shy and reluctant to approach new people. Even in my professional status, I react like this. In a professional capacity I can present in front of a crowd, but I get all shaky and nervous, and start to mispronounce words. I forget to breathe! I have to have it all written down, and I get very anxious if people challenge what I say or dispute the content because I can’t seem to formulate answers or responses that make sense to me. I struggle with strong personalities and don’t like people standing too close to me, unless I know them well. I don’t have a quick wit, so if people do put me down or make adverse comments about me, it is only after the event that I come up with the responses that I wished I had at the time. I also struggle with people who are so career focused that nothing outside of professional interactions are important.

As a parent and also learning my life lessons, my family are my priority. Within that is my faith which is a very integral part of who I am and how I react. My faith allows me to think about things from a different philosophical viewpoint and develop answers that may not be found elsewhere. The stronger I grow in my Christianity, the more important that this comes to me. I find now that my faith is first, and the rest all follows, my marriage, my children and then my work, which allows all of this to occur – it allows me to balance the things that are happening to me and find a framework that sits best with my being. From a Christian viewpoint, I am a 2 in the enneagram, which means I am a relational person. I function from a heart space and emotions are central to the way I interact, react and respond to different situations.

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